Most people with fibrous dysplasia don't have any symptoms and are diagnosed when an X-ray taken for another reason reveals signs of fibrous dysplasia.
However, in some cases you or your child may experience pain and other symptoms that lead you to schedule an appointment with your family doctor or your child's pediatrician. In some cases, you may be referred to a doctor who specializes in treating bone and muscle injuries or disorders (orthopedic surgeon).
Because appointments can be brief, and because there's often a lot of ground to cover, it's a good idea to be well prepared for your appointment. Here's some information to help you get ready for your appointment, and what to expect from the doctor.
- Be aware of any pre-appointment restrictions. At the time you make the appointment, be sure to ask if there's anything you need to do in advance.
- Write down any symptoms you or your child is experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
- Make a list of your key medical information, including other conditions you or your child is being treated for and the names of any medications you or your child is taking.
- Take a family member or friend along, if possible. Soaking up all the information provided to you in a doctor's appointment can sometimes be overwhelming. Someone who accompanies you may remember something that you missed or forgot.
- Write down questions to ask your doctor.
Prepare a list of questions so that you can make the most of your limited time with your doctor. List your questions from most important to least important in case time runs out. For fibrous dysplasia, some basic questions to ask include:
- What is likely causing the symptoms or condition?
- What kinds of tests might be necessary?
- Will this condition get worse over time?
- Does this condition need to be treated?
- Do you recommend follow-up testing to monitor the condition? How often?
- Will medication be necessary? How long will I or my child have to take it?
- Is there a generic alternative to the medicine you're prescribing?
- Do I or my child have to worry about passing this condition on to offspring?
- Do you have any brochures or other printed material that I can take home with me? What websites do you recommend?
In addition to the questions that you've prepared to ask your doctor, ask questions anytime during your appointment that you don't understand something.
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over any points you want to spend more time on. Your doctor may ask:
- When did you or your child first begin experiencing symptoms?
- Have symptoms been continuous or occasional?
- How severe are the symptoms?
- Are you or your child taking any over-the-counter medications for pain?
- Does pain wake you or your child up at night?
- Is the pain or deformity getting better, staying the same or getting worse?
- Is there any activity that you or your child is unable to do because of fibrous dysplasia?
What to do in the meantime
If you experience pain during weight-bearing activities, take steps to prevent injury while you wait for your appointment with your doctor. Support your weight with a cane, crutches or walker.
Jul. 07, 2011
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